The hardest thing we have ever done - Palliative Care Australia

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• specialised strategies which address the needs of special groups, such as younger and older carers, those from Indigenous and CALD backgrounds, those living in rural areas and those with chronic disabling conditions whose eligibility to access palliative care is restricted • multidisciplinary research leading to evidence-based practice approaches to home-based palliative care • partnerships and collaborations between government, service providers, GPs, families and researchers to meet the needs of families for good palliative care. Finally, the analysis of public submissions that follows sheds light on more specific challenges and difficulties pertinent to home palliative care. 38 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
Public Submissions Introduction and Overview As part of the National Inquiry into the Social Impact of Caring for Terminally Ill People, submissions were invited from individuals, families and organisations in the form of one or more of the following: • letters or case studies describing unpaid carers’ stories and experiences • descriptions of unpaid carers’ needs and the extent to which they are being met • policy statements and/or recommendations relating to unpaid carers of the terminally ill • information relating to the needs of unpaid carers and the extent to which they are currently being met by government, other institutions and the community • copies of recent relevant reports or publications • relevant research data and/or literature reviews. A total of 131 organisations were contacted via letter and/or e-mail and invited to make a submission. Champions were assigned to follow-up with a total of 23 organisations. In addition, a national advertisement was placed in the Australian newspaper and also circulated through: • the PCA newsletter • PCA Member Association newsletters • PCA’s e-mail list • stakeholders newsletters and e-mail lists • the PCA website • professional magazines • community newspapers around Australia. This analysis is based on submissions received from 20 individual carers, six volunteers in palliative care and 23 support organisations/ service providers. A further twelve submissions were in the form of newsletters and other printed material, published articles and conference presentations, the content of which was incorporated into the literature review where appropriate. The list of contributors to the inquiry is in the appendix. In the first part of this section carers describe, in their own words, the impact that caring has had upon their lives in terms of mental, emotional, physical and social issues, work opportunities and financial costs, and in particular if they lived in rural areas. Carers also expressed their need for support services, and voiced their feedback on palliative care services and the role of caregiving. The majority of carers who responded to the inquiry were female, either wives or daughters, caring for husbands or parents with mainly cancer or dementia. Two males were caring for their wives with Motor Neurone Disease (MND). In the second part of this section, support organisations and other service providers describe the needs of unpaid carers and gaps in service provision and support, and in particular those of special groups. The two parts conclude with recommendations to ease the burden of caring and improve the status and quality of life of carers, in the domains of information and education, financial and work-related issues, support services and community recognition. THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004 39
Page 1: The Social Impact of Caring for Ter
Page 4 and 5: Acknowledgments Palliative Care Aus
Page 6 and 7: Table of Contents Acknowledgments 2
Page 8 and 9: Conclusions based on public submiss
Page 10 and 11: Executive Summary Palliative Care A
Page 12 and 13: Literature Review Background Relati
Page 14 and 15: Carers in Palliative Care Palliativ
Page 16 and 17: In the USA, according to the Nation
Page 18 and 19: A common feature of caring for indi
Page 20 and 21: Table 4: Effects of caring on the p
Page 22 and 23: Impact on Economic Wellbeing It app
Page 24 and 25: Coping with Caregiving Caregivers o
Page 26 and 27: escort may not be considered medica
Page 28 and 29: Carers of children and children as
Page 30 and 31: Needs and Barriers Information and
Page 32 and 33: to conspiracies of silence where bo
Page 34 and 35: • providing information and refer
Page 36 and 37: implicated by the lack of positive
Page 38 and 39: for a terminally ill family member.
Page 42 and 43: The Impact of Caring Through the Vo
Page 44 and 45: Carer for husband with Multiple Mye
Page 46 and 47: The financial impact of caring Care
Page 48 and 49: The need for support services Carer
Page 50 and 51: Carer for brother with bowel cancer
Page 52 and 53: Seeking community recognition: sugg
Page 54 and 55: The Needs of Carers through the Voi
Page 56 and 57: • accurate information about the
Page 58 and 59: Recognition Service providers sugge
Page 60 and 61: • for the terminally ill person w
Page 62 and 63: People from culturally and linguist
Page 64 and 65: It is worth noting that the Austral
Page 66 and 67: Dawson, S., & Kristjanson, L. (2003
Page 68 and 69: McGrath, P. (2001b). Returning Home
Page 70 and 71: Schulz, R. & Beach, S. (1999). Care
Page 72 and 73: • Julie Murphy (health profession
Page 74: Palliative care services Palliative

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